An Update on how Luke is doing after his surgery, with a bonus of lots of pictures to share, enjoy:-)

I was blessed to be asked to speak at the grand opening for the new wing of Mary Bridge hospital since I had been a part of the design committee. The new hospital addition has turned out to be absolutely gorgeous. Gordy and the kids came to hear me speak at the second ceremony I spoke at on the opening day, here behind us is just one of the amazing murals they have on the med/surg floor. Luke was having a rough day but we brought him along anyway:-)

 Let me begin by saying sometimes I hate the question, "how's Luke doing?" The positive person inside me wants to say that he's doing just fine, but the honest person inside me is screaming no he's not doing fine at all. I'm thankful to say that Luke's surgery went fine, it didn't happen until 8:30 pm which lead to him having to spend the night in the hospital but we went home the next day. The only concern that we've had since his surgery is the fact that the surgery site on his back has not been healing as nicely as the huge surgery site on his front abdomen area. We noticed that his back was bleeding much more than the front and then when it started looking a bit swollen we finally took him into the Dr. to have it checked out. After the Dr. examined the site he said that it didn't seem to him to have any infection in it, but his blood work told us a different story. But since Luke had been put on an antibiotic for what his pulmonologist thought was bronchitis the week before we became concerned his pediatrician thought that the antibiotic he was already taking should take care of any infection he might be dealing with.  

Here's Luke going home the day after his surgery

One of the positive side effects to getting out the pump has been that Luke no longer needs any medication to keep his digestive system working, which has been great because the throwing up that we were dealing with and the constipation issues have now been resolved. I wish I could say that his oxygen needs have also been worked out but that would not be a true statement, he's still needing quite a bit of extra oxygen, but I hope once he's fully recovered from his surgery that too will begin to get better.

Lily made this picture all by herself one day, I think she did a pretty good job of making Luke in his wheelchair. She made this picture the day after we went for a long walk at the park.

We finally had a case manager come out to do an evaluation of Luke's needs and we are going to be getting some much needed caregiver hours, though I'm still waiting for a call from her to say exactly how many hours he will get. Luke will also qualify for medicaid and SSI therefore cutting the amount that we spend on a monthly basis for all his medical bills down to nothing, they will also be paying for his diapers and other necessary items that he needs. That will mean that for the first time in 14 years we will finally be able to stop buying diapers, the savings there will be great also.

Here is Lily reading to Luke out on our back porch, I recently found a hammock with a shade cover on it and it perfect for Luke to use on some of the beautiful sunny days we've been having here lately. Lily was proud of the fact that she read 32 pages to Luke that day, she is becoming quite the little reader lately, taking after her momma:-)

I finally scheduled Luke's knee surgery and I have to say that has been one of the hardest things I've had to do in a long time. We know that Luke needs this surgery to get his legs bending again but the thought of putting him through another surgery, let alone a very painful surgery has me on the verge of tears all the time lately. The Dr. has told us that there is no guarantee that Luke's legs will ever go straight again and there is also no guarantee that they will stay bent, there is also great cause of concern on whether his legs will heal nicely and since the incisions on both legs will be very long there will be a lot of area for the incision to heal. Sometimes I say to myself how can I continue on another day on this journey, seriously this surgery has knocked me out almost stealing all my joy. I know my joy is not reliant on my circumstances, on how Luke is doing, but for me it has to be  reliant on my faith in God. I was telling Ezekiel tonight that I have to work on keeping the joy of the Lord, as I know that it truly does give me extra strength when I am leaning on HIM alone. My secret on those days that are so very hard is to sing praises to Jesus and He is faithful to pull me up once again and remind me that with His help I can do all things, through Christ who gives me His unending strength, thanks be to God!!

I was so blessed to have Sarah contact me right after I spoke at the first ceremony at Mary Bridge telling me that she was at a park that was only a block away from the Hospital so that I got to go spend an hour with her and Penelope, what a huge blessing from God!!

Zeke and I went for a walk at the Nisqually Refuge, he was so excited to see the little goslings that I had to take a picture of him with the ducks behind him.

I'm thankful that Auntie Cindy took this picture of Lily with her science project before she planted it, because a week later one of our local deers ate her project for lunch.

The day before Mother's day I got to spend some time with my mom doing one of her favorite things, taking a drive through some beautiful country. She has passed on her love of exploring new places onto me. Here we are at the Mima Mounds which happens to be a mystery in Washington, acres of mounds that no one is sure how they came to be.

 

On Mother's Day we went up to Seattle to see Daniel and Sarah dedicate Penelope at their church, it was such a sweet ceremony.

 

 

Natalie and Sarah celebrating their first Mother's Day. I'm pretty sure I have the most beautiful grand baby girls in the whole wide world! The most beautiful children too:-)

After the church service we went out to eat at the Spaghetti Factory. The only bummer about that day was the fact that Luke was not well enough to join us, he had to stay at home with his caregiver and it just about broke my heart.

Josh, Natalie and Abigail spent the week with us and of course I had to take them back to the Mima Mounds after discovering it with my mom the Saturday before.

Of course we had to pick a day that it would rain for our hike at the Mima Mounds

 

 

 

We also went to the Tumwater falls and I couldn't resist taking this picture with the beautiful canopy of rhododendrons over head.

Our hike next to the falls was absolutely gorgeous even if the weather was not so great:-)

It was really hard saying goodbye to Josh, Natalie and Abigail as I'm not sure when I will get to see them again. I'm just thankful we were able to find a day to go on a hike, little Abigail is such a trooper, she too loves to explore new places!

I would really appreciate your prayers for Luke, especially that his oxygen needs would get better and that his back surgery site will completely heal. Could you also say a prayer for me to find peace in my heart about Luke's upcoming knee surgery?

Thank you and God bless you,
Luke's Mommy Sue

Luke's 7th surgery is scheduled today, your prayers would be appreciated

Today will be Luke's 7th surgery and to be honest I'm not looking forward to it!! Don't get me wrong I'm very happy to be getting Luke's baclafan pump out, as it didn't live up to what the expectations were supposed to be, it was supposed to help loosen Luke up so that we could get a bend in his knees, but since it was unable to choose the muscles we wanted it to loosen it chose his respiratory muscles, which has caused havoc with his breathing since we had it put in. The pump has also contributed to making the curve in his spine worse, along with causing some pretty severe constipation and throwing up issues. I keep hoping and praying and  hoping and praying that getting the pump out will cause the major issues we've been dealing with for so long to disappear.

Here's Luke swinging with his PT last week

Luke's surgery was originally scheduled for noon, but I got a call yesterday afternoon telling me that it has been pushed off to 6 pm this evening, which will mean he will probably need to spend at least one night in the hospital. I had been told that it not going to be a overnight stay, but now that it's scheduled so late in the day it's looking like it probably will be that way, though I'm still  hoping we'll be home tonight.

Gordy and I taking off on our weekend away

Gordy and I had a great time at our marriage conference, we are both so glad we were able to attend. We have found the only way to keep our marriage strong, during the extremely stressful days we constantly live with lately, is by putting forth the effort to keep our marriage a top priority in our lives. It was touch and go on whether we'd be able to go because of Luke's health needs and then even while we were gone Luke was struggling, but my sweet Amy girl kept assuring me that she would be able to handle Luke on those really challenging night times. We are so thankful to Yoli and Juan who had generously volunteered to watch Luke along with our other kids Friday night, but Luke ended up going home in the evening because we all felt that perhaps he would have a better night that way. We were also blessed to have Jonathan come help out on Sunday morning and then my sister Cindy watched the kids until we got home Monday night.

Gordy and I visiting Multomah Falls in OR

On Monday we decided to drive up to Mt. St. Helens and we are so glad we did it was a gorgeous day

I called Luke's pediatrician yesterday morning to schedule an appointment to be sure that Luke was healthy enough for surgery today as he'd been having such a rough weekend with needing a lot more oxygen, along with having a fever off and on. It was decided that since Luke has not had a fever since Sunday and that after listening to Luke's lungs, which sounded good, we would proceed with the surgery. I was assured that we were making the right decision to proceed.

Please pray that all will go well with the surgery, for a quick and pain free recovery, for his breathing and other issues to disappear once the pump is taken out. I would also like to ask prayer for myself as I am trying so very hard not to be anxious about this surgery, it is so very difficult each time I see Luke wheeled off to the OR. And last but not least will you keep my other kids in  your prayers it's so hard for them to see their brother have so many challenging and painful things happening in his life.

Thank you for your prayers,
Luke's Mommy Sue

Zeke holding Abigail one last time before they took off to go home last week

 

I love these pictures of cousins getting to know each other better.

Both Penelope and Abigail laughing at each other, it was so very cute:-)

A new record for Luke, less than 24 hours spent in the hospital:-)

Here's Luke and I waiting to see the Dr. before we went to the Hospital

Please forgive me for not letting you know sooner that Luke only spent one very frustrating night in the hospital. We went to the hospital because we were told earlier in the day that his lung x-ray looked worse than the one he had taken the previous week. But when we got to the hospital we were told it actually looked better, which while that was great news, it was also very frustrating to learn that we had been admitted for no reason. I knew the whole time we were getting  him all settled in that we should not of been there his numbers were just too good. I should of listened to my gut closer,  oh well we were there less than 24 hours a new record for time being spent at the hospital.

Luke in the hospital doing a vest treatment while watching Leave it to Beaver

Tomorrow Luke has two appointments one for a pre-surgery physical and another one for PT. April 24th is the day that we've scheduled to get Luke's baclafan pump out. Please pray that he will stay healthy so that we won't have to change this surgery date.

Luke on the way home from his short stay in the hospital

We also need prayer concerning Luke's knee's. Luke had an appointment last week with his Orthopedic surgeon to talk about knee surgery, if you've been reading Luke's blog for any length of time you know that we've been praying for years now that his legs would bend. Long story short he will need pretty intensive surgery on both knees to get his legs bending again and even after the surgery we are not guaranteed that they will either stay bent or ever straighten out again. Sometimes the decisions we have to make are overwhelming, I'm thankful that I have a God that I can go to talk to and He will direct our path concerning what are the best things to do for Luke.

In closing I have one last prayer request to mention, Gordy and I are hoping and planning to go to a Marriage Conference next weekend. Amy and Lance, along with some other amazing people have once again volunteered to watch the kids while we get away for a much needed break. PLEASE pray for Luke to stay healthy enough for this weekend to happen, we really need this time to focus on our marriage and ourselves, the stress that we live with day by day, week by week, month by month, year by year is extremely taxing in all area's of our lives.

Thank you for your faithfulness,
Luke's Mommy Sue

Our latest family photo taken earlier today